I saw a neurologist today initially for chronic facial pain but 3 weeks ago developed tingly, buzzing, prickly, numb sensations in my legs, feet, arms and hands. Oh yea and face. Its 24/7 and getting worse. My legs also have a deep ache that burns at times, they feel heavy and I have decreased strength. They feel like they spasm at times. I also have experienced confusion and feeling disoriented. And Most recently eye floaters but that could be stress. So anyways! He diagnosed me with atypical facial pain, which I figured he would even though I’m convinced its atypical TN. He gave me klonopin and told me to come back when im done breastfeeding to try some other things. He brushed off all my other symptoms as the anxiety and stress of being a new mom, or migraine related. but ordered a brain MRI with MS protocol but not a spinal MRI. I feel really defeated and not taken seriously. I am just wondering what these symptoms could suggest? Could this be MS related? I am following through with the MRI but finding a new neuro in the meantime. Btw my labs are perfect - not deficient and anything and everything is stellar. I do experience pain in other parts of my body as well. Thanks in advance.
I have been experiencing some of the same symptoms as you, for the past month or two. Numbness in my hands, particularly right arm, now my right toe has gone no,b and my left toe is starting too. I just had an MRI and CT scan today, so hopefully the results will show something. Prayers to you! I believe it can be early on set of MS. I also have a benign meningioma,they say is unrelated to my TN. May I ask how old you are? I know it is not usual to develop TN in mid 30’s but I did.
Melissa
Hi Sara -- I was diagnosed with 'idiopathic' TN and suffered a lot until I got myself referred to an MS specialist. As I was a bit older (51) and my MS symptoms were sensory, not motor, the neurologist I was seeing refused to even consider that the MRI was able to see something that his years of clinical experience couldn't see. A wee bit arrogant:-) Yes, there were lots of lesions on the MRI he ordered but he didn't take the radiologist's report seriously as he had already decided that I was a psych case. My MS neurologist says that I've had MS for at least 8 years. It's highly unusual for an older person like me to have TN as an early major symptom. I have had a nightmare experience by not being listened to and did everything I could to figure things out on my own. Unfortunately, being female means we often get treated poorly by the medical system. If you want to know more about my story, I've written extensively about it on my website www.jennifersweeney.ca
Like you, I had symptoms but all my tests -- bloodwork, ultrasounds, etc -- came back 'normal'. Get your MRI done as soon as you can and ask for a CD copy of the scan so you have your own records. Good luck!
259 views and only a couple of comments. Well, shows this is an interest and others are wondering the same thing, or maybe they have answered privately . How have things turned out, Sara? I just joined this group today. I don't have a diagnosis of MS, but like this discussion, I also have begun having unusual symptoms...tingling or numb feeling in my hands and lower arms (started in my little fingers and the next fingers. I'd check to see if I was putting pressure on my ulnar nerves, and I wasn't. Numb feeling to little toe on right, then it would go away and a few days later, numb outer great toe ( and I've been barefoot). Feeling like I have a "clowns" make up around my mouth with just this odd sensation. Both calfs feeling uncomfortable, I'm not sure what to describe, but I would find myself changing position to get away from it. All these symptoms have rotated, come and gone. I see my neurologist next month and if I don't completely feel like an idiot, I'll bring it up.
Please let us know what you find out about the "clown's makeup" feeling. I had something very similar last fall that lasted for a bit over 2 weeks. My entire mouth was numb and tingling at the same time. The area around my lips but extending a good inch around. My (now ex) neuro dismissed it. It returned a time or two after but only for a short duration.
invisible said:
259 views and only a couple of comments. Well, shows this is an interest and others are wondering the same thing, or maybe they have answered privately . How have things turned out, Sara? I just joined this group today. I don't have a diagnosis of MS, but like this discussion, I also have begun having unusual symptoms...tingling or numb feeling in my hands and lower arms (started in my little fingers and the next fingers. I'd check to see if I was putting pressure on my ulnar nerves, and I wasn't. Numb feeling to little toe on right, then it would go away and a few days later, numb outer great toe ( and I've been barefoot). Feeling like I have a "clowns" make up around my mouth with just this odd sensation. Both calfs feeling uncomfortable, I'm not sure what to describe, but I would find myself changing position to get away from it. All these symptoms have rotated, come and gone. I see my neurologist next month and if I don't completely feel like an idiot, I'll bring it up.